Saturday, February 1, 2020

Saturday, February 1, 2020

Tonight's picture was taken on February 5, 2009. Mattie was in the child life playroom and sitting next to him was Sally. Sally was "the story lady!" Mattie loved Sally and no matter how sick he felt, he never turned down a visit from her. When Mattie wasn't well enough to go to the playroom, she came into his room. With her stories and props she could transform any environment. Mattie would eagerly play along and she truly brought moments of happiness to both of us. 


Quote of the day: Baking may be regarded as a science, but it's the chemistry between the ingredients and the cook that gives desserts life. Baking is done out of love, to share with family and friends, to see them smile. ~ Anna Olson

We took Sunny for a walk on Roosevelt Island today. Something we did practically every weekend with Mattie. Mattie loved it and so does Sunny. The beautiful part about the Island is that it is just minutes from us and though it is surrounded by city, it is a wonderful wooded space that makes you feel more serene. 

There were deer out and about! Can you see the one in the middle of my photo? Sunny loves spotting deer and I am sure if he was off leash, he'd be chasing them. 

See what I mean? They were everywhere! These deer are clearly used to the presence of people, and for the most part they watch us and we watch them. 

This was a baby deer. She caught my attention. Apparently next to her was her mother. I did not see the mother, but Peter did. This would have been a total Mattie moment, as he loved seeing animal moms with their babies. Whenever he saw such a pairing, he would say to me.... that's us!

Meanwhile, we have been invited to a Super Bowl party tomorrow. Which is hysterical because I despise football and truly am not a sports person. It doesn't interest me in the least. But my friend says the game will be playing in her basement area and those who don't want to watch the game will be in the family room. 

We were asked to bring cookies. I debated about whether to buy them at a bakery or bake them myself. Certainly buying them would have been easier, but to me there is something special about making them yourself. After looking at the prices of cookies in our local bakeries, I decided.... I am definitely baking! Today we made two dozen macaroons and three dozen chocolate chip cookies. 

I am still stunned by what I learned. If I wanted to purchase two dozen macaroons and three dozen chocolate chip cookies (from a bakery, not a grocery store), I would have paid over $100. Clearly I have missed my calling, as I should set up shop and bake cookies all day! 

Friday, January 31, 2020

Friday, January 31, 2020

Tonight's picture was taken on January 31, 2009. Hard to believe 11 years ago today, when it seems like yesterday. We took Mattie out to lunch with my parents. Ironically prior to getting cancer, Mattie never wanted to sit still at a table and eat. However, given the disease and how it limited his physical abilities, Mattie had to learn to do sedentary things. He may have been sedentary, but that did not mean his brain and personality were inactive. On the contrary, Mattie was always on and engaging!


Quote of the day: Moving doesn't change who you are. It only changes the view outside your window. ~ Rachel Hollis


Though tonight's quote maybe true, I do think we are influenced by where we live and what surrounds us. As we move from one place to another, we are exposed to different thoughts, people, and experiences (good and bad) and they influence who we are and who we can become. For example, I will never forget moving from New York to California when I was entering 10th grade of high school, I was 14 years old. Funny how a grown adult can remember the experience of a move, but I do, as I never fit into life in California and as such, there were challenges that I had to overcome. In fact, I learned first hand how difficult it was to enter a school in which most of the kids knew each other since kindergarten, gave me insights into how to treat people. I never like to see someone ostracized or sitting alone, if they want to be part of a group. I learned that act of inclusion the hard way, when such kindness was not shown to me. 

After high school, I moved back to New York. Upstate NY, to be more precise, to attend college. The view outside my dorm window was quite different from California. As upstate NY was cold and we even experienced snow in October. I will never forget seeing this first snowfall in my freshman year of college. However, to me moving is much more complex than your visual surroundings. It was within college that I joined choir and through that activity I met Peter. My point being that when the view outside your window changes, chances are the view inside your room does too. 

I could go on and on with my experiences on moving, but I guess the bottom line is our surroundings are much more than just our view. Our surroundings define us because within those surroundings are our friends, colleagues, and neighbors. It is people and our experiences with them that influence our feelings, attitudes, and thoughts. 

Thursday, January 30, 2020

Thursday, January 30, 2020

Tonight's picture was taken on January 14, 2009. Mattie was in NYC to receive his first dosage of experimental treatment. Before treatment began, we asked Mattie what he wanted to see in the City. We gave him options and he chose to go up the elevator of the Empire States Building. Mattie grew up in Washington, DC where there is a height cap on the buildings! So to Mattie, NYC was fascinating with skyscrapers everywhere! We went to both observation floors of the building and Peter snapped this photo of us at the 102 floor!


Quote of the day: Improvements in cancer treatment have led to increases in the childhood cancer survivor population. Many survivors are at risk for serious late effects from their cancer treatment, including second cancers, cardiovascular disease, and respiratory problems. ~ Jennifer Ford


I received an article today entitled, Barriers and Facilitators of Risk-Based Health Care for Adult Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study. I think our society has a real misconception 
about surviving cancer. In that, the thinking is if you survived treatment, you are cured, and life goes on. Unfortunately that couldn't be further from the truth. High dose chemotherapy, like what Mattie endured, has both physical and mental health consequences. What intrigued me about this research article, was the study investigated the reasons why childhood cancer survivors do not receive follow up care (survivorship care). After all with all the secondary issues that arise from treatment, these individuals will truly need to be monitored all their lives. 

The main barriers for seeking healthcare in the non-cancer populations are lack of health insurance and transportation issues. These are not the same barriers for cancer survivors (I am not saying this, the research is). One of the main issues for adult survivors of childhood cancer is they become disconnected from the hospital they received their care from when they were a child and finding another facility for cancer-related care may present a problem. It is of concern that survivors do not have the necessary information to facilitate follow-up care in that fewer than 20% reported having a cancer treatment summary. Imagine being diagnosed with cancer as a child, surviving it, and then as an adult being asked about the medical treatment you received as a child. Chances are adult survivors of childhood cancer won't know and without having access to a treatment summary, it makes it very hard to be proactive in survivorship care.  

This research study discussed the benefits of educational interventions for patients and improving awareness of a patient's treatment history. Both of these suggestions are accurate, but I would take it one step further and say that the educational interventions also need to be supplied to primary care physicians. Many of whom are not well versed in the long term effects of childhood cancer and they do not understand the relationship between cancer in childhood and the affects on health and well-being in adult survivors. In any medical relationship, there has to be a collaboration between the patient and the physician for care to be effective. The responsibility for follow up cancer care doesn't only belong to the patient, but it belongs to any physician caring for an adult survivor of childhood cancer. 


To read the article, click on this link:
https://acsjournals.onlinelibrary.wiley.com/doi/epdf/10.1002/cncr.32568?referrer_access_token=IzUd2bp71caT5NQmXLGRgE4keas67K9QMdWULTWMo8P5bzzagg-gaNlhOk_NpiuJ_FYe0ZbkaUmI-UQGrUKQ2i4TDHEBk8fL22hMtPvZn9kfAY4wqula3cHfoHd9FRYeygNfyoeS5OB74TVOQ2palQ%3D%3D

Wednesday, January 29, 2020

Wednesday, January 29, 2020

Tonight's picture was taken in January of 2009. Mattie was home between treatments and got a visit from our resident Jack Russell terrier, JJ. Mattie grew up with JJ and I think it was JJ who inspired Mattie to want a dog of his own. You will notice that Mattie was sitting on the floor. This was where Mattie was most comfortable, given that he really was unable to walk, sitting on the floor gave him the ability to scoot around without having to take steps. 


Quote of the day: What we do for ourselves dies with us. What we do for others and the world remains is immortal. ~  Albert Pine


Today we had a 30 minute call scheduled with a person who knows Mattie Miracle's work on the periphery. Our goal was to inform him about Mattie Miracle, to discuss what we have accomplished to date, and to share our vision regarding psychosocial care and the implementation of Psychosocial Standards at treatment sites around the country. 

Mattie Miracle focuses on all things Psychosocial and I think it is noteworthy that we are the only national non-profit dedicated to psychosocial awareness, advocacy, research and support of childhood cancer. Of course when Mattie first died, we did not know how we personally were going to function from day to day, much less have a vision and goals for the Foundation. Yet in our first decade we have raised $700,000 to support our programs and supported 30,000 children with cancer. In addition, I made talking points for myself today which highlight all our activities and accomplishments and as such why individuals and other non-profits naturally turn to us for psychosocial inquiries and information. 

Awareness

1. Annual walk (we are hosting our 11th annual Walk on May 17th)
2. Newsletters
3. Contribute to book chapters and articles
4. Present at conferences and schools

Advocacy

1. House Resolution 262 in 2011 – a document which highlights the importance of education, awareness, and research of psychosocial care for children with cancer (McCaul, Van Hollen, Speier).
2. Held the First ever Symposium on psychosocial care (Capitol Hill, 2012). Had over 80 attendees from 12 different states. 
3. Roundtable on Capitol Hill (2017).
4. Added psychosocial language to STAR act (passed into law 2018).

Research

1. Four-year long research project (involving over 80 healthcare providers) to develop evidence based psychosocial standards of care. Largest evidence based psychosocial standard research project in history, reviewing over  13,000 articles. 
2. Paid for publication and open access to these published standards in Pediatric Blood & Cancer.
3. Funded $60,000 worth of implementation research in 2019.

Support

1. Funded four child life professionals. Our child life specialist assist 3,500 patients a year. 
2. To date, we have helped 30,000 children with cancer and their families.
3. Operate two free snack and item carts to support families caring for children in the hospital. Carts serve 2,500 families a year. 
4. Run community item drives to support our carts. 

Tuesday, January 28, 2020

Tuesday, January 28, 2020 -- Mattie died 539 weeks ago today.

Tonight's picture was taken on January 23, 2009. It was about two months after Mattie's second major limb salvaging surgery. A surgery that transformed Mattie's life, because in that moment he became not only a child with cancer but one who also had a physical disability. Next to Mattie was Anna, Mattie's physical therapist. Anna worked very hard at trying to get Mattie up and walking. That particular day Mattie took a few steps with this posterior walker. As you can see Anna was thrilled! However, after all of Mattie's surgeries, he never walked independently again.  


Quote of the day: With research and case examples, the continuing bonds theory fundamentally changed the way we conceptualize grief (and when I say ‘we’, I mean ‘grief professionals’.  I suspect this has been intuitive to grievers for thousands of years!) ~ What's your grief


My friend Denise sent me an article entitled, Continuing Bonds: Shifting the Grief Paradigm (https://whatsyourgrief.com/continuing-bonds-shifting-the-grief-paradigm/). The title alone is catchy isn't it!? So naturally I continued reading the article. The article itself is short but it does a wonderful job at introducing its reader to a whole new way of thinking about grief. I love tonight's quote from the article, because it highlights the chasm between researchers/clinicians and those of us who are grieving. Researchers/clinicians have espoused for years the importance of accepting the loss or finding a new way of living. Whereas those of us who walk with grief each day want to know WHAT IS THERE TO ACCEPT? Being asked to accept the impossible is hard to swallow, so instead intuitively over time we find ways to move forward but at the same time maintain a bond with the one who died. 

Apparently continued bonds are at the core of grief counseling today. The grief book, Continuing Bonds: New Understandings of Grief (Death Education, Aging and Health Care), was published in 1996. The authors, Klass, Silverman, and Nickman, question the traditional models of grief. The book suggests that these linear models, which end in a detachment from the person we have lost, were denying a reality of how people grieve. Instead, these authors suggested a new paradigm, in which healthy grief did not resolve by detaching from a loved one, but rather in creating a new relationship with the deceased. For me, this blog and my work with the Mattie Miracle Cancer Foundation are my continued bonds!

Here is the 30 second summary about continued bonds: under this model, when your loved one dies grief isn’t about working through a linear process that ends with ‘acceptance’ or a ‘new life,’ where you have moved on or compartmentalized your loved one’s memory.  Rather, when a loved one dies you slowly find ways to adjust and redefine your relationship with that person, allowing for a continued bond with that person that will endure, in different ways and to varying degrees, throughout your life. This relationship is not unhealthy, nor does it mean you are not grieving in a normal way.  Instead, the continuing bonds theory suggests that this is not only normal and healthy, but that an important part of grief is continuing ties to loved ones in this way. Rather than assuming detachment as a normal grief response, continuing bonds considers natural human attachment even in death.

The bold text above I think is particularly poignant. Especially since it is COMPLETELY counter to the way society thinks about grief. All I know is that society's philosophy on grief did not resonate with me, and I hated when people expected me to return to NORMAL after the first year after Mattie's death. Unfortunately it doesn't work that way...... there are NO NEAT fixes, and expecting this to happen only sets up a bereaved person for failure. 

It seems to me that people get edgy around those of us who have experienced a tragic loss. Yet it is my hope that the continued bond concept catches on, because then friends and family will know that the way they can truly help us is by keeping these continued bonds to our loved one alive and well. 

Monday, January 27, 2020

Monday, January 27, 2020


Tonight's picture was taken on January 12, 2009. Mattie was invited to his friend Abbie's birthday party. Honestly parties were difficult for us, as I was on hyper alert about Mattie's mood, how others would treat him, and of course given his physical limitations, I worried about his safety. Sometimes Mattie could keep it together while out in public, but then when we got home, Mattie would lash out at us. It was overwhelming and heartbreaking at the same time. 






Quote of the day: There is no greater sorrow than to recall in misery the time when we were happy. ~ Dante Alighieri


I think Dante's quote is quite poignant. Of course I would say that life before Mattie was diagnosed with cancer were happy times. Sure we may have had the typical ups and downs of everyday life, but nothing as traumatic as making 24/7 life and death decisions about your child. My life has two parts to it, pre-cancer and post-cancer. Mattie's diagnosis and death have transformed our lives, how we view the world, and our future. 

I was talking today to someone who has had multiple miscarriages. These multiple losses are not something this couple had factored into their future. As this young couple started out very much in love and with their life ahead of them. Yet with each loss they experienced, it transformed their relationship and how they felt about one another. So much so that the couple is now separating. 

Can I understand this? Absolutely! I think Peter and I could write a chapter on loss and how it impacts a relationship. In fact, Peter mentioned this exact topic at the Social Security workshop that we attended last week, and you could see people in the audience were uneasy and unsure of how to react to this raw but true information. 

The fact is our society views the natural progression of a relationship in a certain way, with no regard for the unexpected. Many assume that a woman and man in love will get married, have a house, have children and the family will grow and mature together. What happens when this doesn't happen? It isn't only sad but it can tear families apart and truly the world around us has absolutely no idea how to help. Some don't even want to, as you serve as a constant reminder of pain. After Mattie died, I remember many people I knew who would walk the other way if they saw me at a store fore example. They avoided me at all costs as I am sure they did not know how to deal with me, perhaps did not want me to feel worse, or frankly they didn't want to face the reality of my pain. As my reality could be ANYONE's really, especially when you think that 46 children a day are diagnosed with cancer in the USA. 

What interests me about today's conversation was that we had similar ways of thinking. We both see the world in terms of a trauma. Meaning, that when I see people talking about marriage and about eventually starting a family, I feel no joy in hearing this, nor do I feel happy for the couple. Because in my mind, the question that pops into my mind is..... what makes you think you will have healthy children? Of course the majority of the world has typically developing children, yet for those of us who have a child with an illness or disability, we know that life isn't always fair and the natural progression of things is NOT a given. Clearly not a conversation I can have with everyone, yet when I find someone who speaks my own "emotional" language, it makes me see that I am  not alone!

Sunday, January 26, 2020

Sunday, January 26, 2020

This photo was taken on January 13, 2009. We took Mattie on a boat tour around New York City. A kind passenger snapped this photo of us. Due note that we were on the Hudson River two days before the US Airways 
Flight 1549 crash (the plane after takeoff from New York City's LaGuardia Airport struck a flock of Canada geese and consequently lost all engine power). Two days after this photo was taken, many boats like the one we were on went to the crash site to pick up passengers in the water. 


Quote of the day: Many ideas grow better when transplanted into another mind than the one where they sprang up. ~ Oliver Wendell Holmes


I am still dealing with a swollen ankle, but as long as I can walk, I do! We took Sunny for a visit around Roosevelt Island today. That is two days in a row, and he loves it. He meets other dogs there, we talk to other owners, and he loves checking out the trees, bushes, and the boardwalk. Then Peter and I put our minds together and started working on some promotional material that our board member requested. Clearly Peter or I could have done this alone, but like Holmes' quote, I do think that when we dialogue and share ideas, what we generate is more meaningful and impactful. 

Meanwhile, check this out! This is Pastries by Randolph in Arlington, VA. My friend Carolyn gave me cupcakes from this bakery last year. I asked her where this place was located and today I had the opportunity to visit it for the first time. It is like walking into a candy store. So many wonderful products for the eyes to see. I haven't seen a bakery like the caliber of this one in our area in a long time. I was on a mission to buy cupcakes for a friend of mine and I was totally impressed with the professionalism and efficiency of the women working behind the counter.